Chronic Fatigue in Pelvic Pain Diseases - Endometriosis/IBD/Bladder Pain

Hi everyone,

I am new to this group, and am hoping for some help and support from seasoned pelvic pain sufferers. I will give a bit of background of my medical history, and wonder if there is anyone who can relate with any aspects with confirmed diagnosis of IBD or Endometriosis who could give advice on how best to manage please?

My problems began when I was pre-pubescent, at which point I was anemic. I went on to have heavy, irregular, painful periods, and became prone to fainting. As I grew older the anemia resolved and I have never had any issues like this since.

However, over time my irregular periods became worse until approximately nine years ago when I was referred to gynaecology. I had symptoms of painful periods, continual bleeding, heavy bleeding and painful intercourse. After many tests I was told I most likely had endometriosis. I have since been treated hormonally with the combined pill (previous negative experience with progesterone contraceptives), and was advised against a diagnostic laparoscopy by the gynaecologist at that time.

I was then referred to urology around 5 years ago following a series of episodes which mimicked those of a severe UTI with back pain and chronic microscopic haematuria, and was then diagnosed bladder pain syndrome. I was treated by Toltredine, followed by a bladder distention which both failed, and until 2 months ago was managing my urgency using Mirabegron (Betmiga). The next recommended treatment is bladder installations, which I have been reluctant to have.

In the meantime my general health declined, my pain increased across my back and pelvic region into my hips with mid-cycle "flares". I also began getting severe regular pins and needles, migraines, dizziness, recurrent nausea, and I caught countless infections. My periods became worse again, I bled mid-cycle and often through my clothing on my period. Blood tests were all normal and the doctors refused to believe this could be related to the previously suspected endometriosis.

In 2020 I then developed severe chronic diarrhoea. After many mishaps by the GP to rule out anything other than suspected IBS, eventually my calprotectin level was found to be approx 400 (not during an diarrhoeal episode). A colonoscopy performed in 2021 then revealed mild-moderate inflammation of the terminal ileum. I was referred to the IBD team for consultation last Autumn and will eventually be seen later this month for discussion about further investigations.

In the meantime I seen a private Endometriosis Specialist Gynaecologist regarding my period health and generalised feeling of being unwell. He agreed my symptoms were consistent with deep-infiltrating Endometriosis of the bowel, bladder and utero-sacral ligaments. However as my private MRI was clear, he could not place me on an NHS list for his practice due to demand. A letter was written to my GP and I was referred to general gynaecology for laparoscopy as I could not afford the private surgery. I expect to be seen in Nov/Dec this year. Itried an anti-inflammatory diet and was also prescribed Dienogest (Zalkya) which I take in combination with the mini-pill (Cerelle), since January this year.

Following this treatment my flare pain improved gradually, but I still had a daily deep ache in my groin. My periods have now stopped completely, as have the flares. However, my mental health plummeted and I became exhausted. I work full-time shifts in the NHS, am undertaking a part-time master's degree and got married this year, so I initially blamed stress. I had 3 month sick leave earlier in the year to recover, during which I was trialled on codeine and amitryptiline to help with pain, insomnia, dizziness and brain fog. I went from sleeping for up to 4 hours to 12-14hours a day and was still crippled by exhaustion. Another GP consultation concluded I could have neuropathic pain potentially associated with endometriosis and chronic fatigue. I was taken off the painkillers and prescribed a low dose of Duloxetine. Although not a miracle pill, I improved enough to get back to work.

However, I am still suffering exhaustion. I regularly fall asleep on the sofa after work, have little energy to contribute to housework or social activities, and have a nonexistent sex life with my poor new husband (pain and exhaustion related). My work pattern was altered to take me off 12 hour shifts, but I don't think this has been helpful so far and my sickness record has become abysmal. This is distressing as I am a very career oriented individual. I have also began to experience stiff and sore joints after waking, and my legs feel heavy and tired at night. Any strenuous activity completely wipes me out. Recent blood tests are normal, and the GP has no helpful advice except to come off all of my existing medication. I already worked hard to whittle down to just 3 pills from what was initially 11 different medications to cope with flares and pain over the past year

( Dienogest, Cerelle and Duloxetine).

I wonder if anyone can relate to my symptoms, and in particular the fatigue? Especially if you are on the same medication or have a diagnosis of endometriosis/IBD/painful bladder. Any helpful tips to help cope with the exhaustion would be appreciated, or even just to know that this is a normal symptom of these conditions that can be managed after I have firm diagnosis of endometriosis or IBD (or both) would be re-assuring.

Anyone who can share experiences that can help fight my case with the doctors would also be helpful. I am a medical professional with good knowledge of medical terminology (but not a Dr) and have had to advocate every single part of my care thus far, so please share any of your experiences if you can relate in any way!

[CallMeSunny]

You have had and continue to have such complex issues; I applaud your tenacity in continuing to lead as normal a life as you are able against such constant set backs. I have no knowledge of the awful issues you describe but the mention of “sore joints and stiffness” rang alarm bells for me as these are common presenting symptoms (along with chronic fatigue) of rheumatoid arthritis (plus all it’s sub-sets). Perhaps your GP would support an RA specific blood test (although a percentage of RA patients do not show any positive rheumatoid factors in their blood…I’m one of these sero-negative patients). Do any of your joints ever show signs of inflammation (puffy) or heat? Is the stiffness/soreness worse in the morning, for how long? RA, as being a medical professional you will likely know, is an extremely complex disease which can and does affect any area of the body, including bowels and reproductive organs. It might be worth chatting to your GP and/or asking for a referral to a rheumatologist? I also belong to the RA forum in HU…..you might find it helpful to have a look and if anything is ringing bells, then the NRAS is an invaluable source of knowledge/help (booklets, phone advice etc). Do let us know how you get on…..and the very best of luck to get your life back on track. Sue.

[CallMeSunny]

This should follow on from my first reply……..From a medical resource, ncbi.nominated.nih.gov. Role of Calprotectin in RA……. Currently, plenty of studies have indicated significantly increased serum and synovial fluid levels of CLP in patients with RA. It was reported that CLP was related to cell differentiation, migration, apoptosis, and production of pro-inflammatory factors in RA. In addition, there are the positive relationships between serum, synovial CLP and traditional acute phase reactants, disease activity, ultrasound and radiographic progression of joints, and treatment response of RA. In this review, we mainly discuss the role of CLP in the pathogenesis of RA as well as its potential to estimate clinical disease progression of RA patients.

Keywords: rheumatoid arthritis, calprotectin, inflammation. Sue.

[Konagirl60]

You’ve been stressed out for years! This takes a toll mentally, emotionally and physically.

I’d insist you get all your mineral levels measured stat. Medications can cause serious deficiencies of them. Check your iron by measuring ferritin and transferrin.

Buy some magnesium bisglycinate ( for muscle aches and pain ), curcumin for inflammation and liver health, passionflower to calm any anxiety and insist on getting that laparoscopy to check for endometriosis.

I’m like you. I had menstrual pain my entire life with fainting spells and heavy bleeding. I couldn’t conceive after I was married in 1987 because my Fallopian tubes were plugged with menstrual blood. I needed a hystero salphongoigram to clear my tubes!

Several years later at age 61 and menopausal for ten years, I had a laparoscopy for another reason and my right ureter was covered in endometrial tissue!

I’m so sick of the IBS excuse when it’s a menstrual disorder that is the reason for anemia and pain. Good luck. You’ve suffered enough.

[grafixartist]

I have IBS-C, interstitial cystitis, pelvic floor dysfunction and manic depression. I am having the laparoscopic procedure in a week to be checked for endometriosis. I have SI joint dysfunction on the left side as well. I feel exhausted all of the time too. I am thankful to work part-time since I was awarded disability in 2010. I have constant pelvic pain. It interferes with my ability to fall asleep and stay asleep. I am never comfortable. Dealing with chronic pain every day is just absolutely exhausting. It is depressing, and I think that it is the majority of the reason why I am so tired all of the time. I constantly ache and hurt in my hips, my abdomen, my groin, my bladder, and my low back. I understand exactly what it is like to just feel exhausted all of the time. I hope you get the answers you are looking for, and I pray that you get some relief from all that you are going through.

[Desperateforrelief]

Oh my! You've had a constant battle for a long time. I can relate to some of your symptoms. I was chronically tired and sleeping 12 hours a day. I bled heavily with my periods and would often have blood leak out as well. They were just too heavy. I had the dull ache you describe. I had adenomyosis, a form of endometriosis that works it way through the muscles of the uterine wall. It is very painful. My bowels were affected during my period and I would get diarrhea. I've had several colonoscopies all clear, so no bowel problem you have. Above a woman mentioned rheumatoid arthritis, that is a good place to check. My daughter has the same symptoms of stiff joints heavy legs and she was diagnosed with Lyme's disease. It comes from a tick bitr. Thought it might be worth mentioning. It sounds to me like you have coped very well throughout the years. Painful sex is also something I can relate to. Mine was related to adenomyosis. Heating pads help a lot. I'd buy the heat packs they make that stick to your body/underware. I had them on a lot. I hate to say this, but I got better after hysterectomy. This can cause other problems, not something to just jump into. At the time I had 3 small children. I couldn't function. It helped for that time and my sex life came alive, pain cleared. I don’t know if you've tried any suppositories. They mix 2 kinds of muscle relaxers with lidocaine for me. They also helped, pelvic floor spasms seem to come along with this kind of problem. My uterus was enlarged and I had large vericose veins to the uterus that also caused heavy bleeding. I pray you get the help you need!

[Desperateforrelief]

oh, and I should have mentioned, I have struggled with my bladder most of my life, it started when I started my periods. Got better after hysterectomy. But is worse since I was hurt by transvaginal mesh for stress urinary incontinence. I think everything is interelated in our pelvic floors, one thing affects another. I learned through PT that a pain I felt in one spot was actually being referred by another spot. It makes diagnosing pelvic pain harder.

[JoannaERC]

Did you consider adenomyosis or fibromyalgia ? Symptoms very similar.